Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Frustrated - Tired Of Being Dismissed. Waiting On Biopsy Results.

Maoftrips

Recommended Posts

Maoftrips Newbie
Maoftrips
Posted

A little history...I am 39 years old. I've had belly issues for as long as I can remember. I was diagnosed with irritable bowel syndrome in my early 20's.

My symptoms:

Nausea (I don't always feel awful, but I never feel good. This is daily. Something I unfortunately considered normal for me. It's all I've known for over 20-25 years).

Abdominal cramping

Constipation and diarrhea (less C and more D)

Stool contains a lot of mucous, floats (fatty stool?)

Frequent headaches

Fatigue/sleepiness

Numb/tingly hands and feet (most intense after eating)

Brain fog (feels like "medicine head")

I had my gallbladder removed three years ago. I have another autoimmune disorder that caused six miscarriages (I now am the mom to three nine year olds as a result of INVITRO. They administered IVIG and heparin to sustain pregnancy).

My numb/tingly hands started just a few months before I had my gallbladder removed. I saw a doctor at that time to discuss the numbness (I had an MRI to rule out MS and stroke, bloodwork and EKG to rule out heart issues). When that came out all normal, he said he didn't know what else could be causing it. He said the fatigue was due to being the mom of three kids. This kind of ticked me off. I get that it's tiring, but there is a difference between being exhausted from life, and SLEEPY all the time. My headaches he attributed to three children as well. Sigh. My constipation and diarrhea due to ibs, and for my nausea, suggested I give up dairy to see if I was possibly lactose intolerant. I gave it up for about two weeks. No change. Perhaps I didn't give it long enough.

I was so happy to have MS ruled out, I let it go. I blame myself for not being proactive in getting to the bottom of what was wrong with me. Nausea and these weird numb hands and feet were my new normal. I'm not the person I used to be. I used to be fun, cheerful. I feel like I'm just this lump of grumpy because I never feel good. I guess I could add irritability as a symptom, but I feel of course I'm irritable, I feel like crap!

Zoom to now. I've gained 30 pounds the past two years. I can't lose weight. No matter what I eat, how much I exercise, the scale doesn't move. If it does, it moves up. I was playing around online seeing what I could do, and why I wasn't losing. It kept leading me to gluten and celiac. I read the symptoms...nausea, headaches, etc are symptoms to almost all ailments it seems. Then I got to the numbness and miscarriages...and a lightbulb went off.

I saw a new doc :). She said it could be thyroid, vitamin B deficiency, or celiac. Thyroid and VB came back normal. She did one blood test for celiac (iGa?). It came back negative, but she said it is not uncommon for false negatives, so she recommend I go in for a biopsy to confirm or rule it out. I had my biopsy this morning. I'm frustrated because the GI doc seemed totally aggravated that I was having a biopsy done. He said that since my bloodwork came back negative, I do NOT have celiac. He said the numbness has nothing to do with celiac...unless of course I was malnourished, which I didn't appear to be (yes, I am overweight), and my bloodwork didn't reflect that.

He said when it comes back negative (not if, when), we can meet again to look into getting meds to help with my IBS. Good news is that even though he gave me attitude, he did perform the biopsy. I should get results early next week. I told him that if it turns out negative, I still plan to eliminate gluten to see if that helps rid me of my symptoms. He looked at me like I was out of my kind and said dryly, "if you don't have celiac, you don't have problems with gluten." Fine. Whatever. I didn't argue with him. What does it hurt to try? I'm happy I got my biopsy. I'm hoping it gives me answers.

If any of this sounds like your experience. If you could give me any advice. I really appreciate it!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,083
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...